French Rare Disease Platform / Association Maladies Rares Info Services
96 rue didot
75014 Paris - France
Tél. : 01 56 53 53 48
N° SIRET 440 803 724 00028
Editor : Agnès Le Dréau, Déléguée générale Maladies Rares Info Services
Hosting : OVH - Roubaix (France)
Contributors:
• Valérie Foulon, Director of Communications, Alliance maladies rares
• Stéphanie Bardon, Deputy Director of Communications, AFM-Téléthon
• Pascale Milani, Director of Communications, Fondation Maladies Rares
• Stanislav Ostapenko, Director of Communications, EURORDIS
• Charlotte Rodwell, Partnerships and Communications Officer, Orphanet (Inserm)
• Agnès Le Dréau, General Delegate of Maladies Rares Info Services
The content of this website may contain errors or omissions. It may also be modified and updated from time to time.
If you notice a broken link, an omission or an error, you can report it by sending an e-mail to donnees@maladiesraresinfo.org.
Personal data:
The information collected on this site is recorded in digital format by Maladies Rares Info Services. It is used only to process the request made. It is kept for the time strictly necessary to achieve the aforementioned purposes. The organisation in charge of the French Rare Disease Platform shall not transfer data outside the European Union. In accordance with law no. 78-17 of 6 January 1978, as amended by regulation (EU) 2016/679, you may object to the use of your personal data or you may access them for the purposes of rectification, limitation or deletion, by contacting the us by email donnees@maladiesraresinfo.org
The French Rare Disease Platform declines all responsibility for websites who that publish a link to the French Rare Disease Platform website.
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This information is stored on your device for 1 year after your last visit. Please note that you can prevent cookies from being saved by adjusting your device’s settings
Copyright:
This entire website is subject to French and international legislation on copyright and intellectual property. All reproduction rights are reserved, including for downloadable documents and iconography and photography. Reproduction of all or part of this site on any electronic medium whatsoever is strictly prohibited without the express authorisation of the publication’s editor.
The French Rare Disease Platform is managed by Maladies Rares Info Services and is funded by the AFM-Téléthon (the main funder) and the Ministry of Health and Access to Care.
Book a room The French Rare Disease Platform has a number of meeting rooms on its premises available free of charge, days a week, to rare disease stakeholders. To access the room reservation tool, you must be a stakeholder involved in rare diseases and/or an association that is a member of the Alliance maladies rares.
contact us Book a room
Access to The Plateforme maladies rares is located at 96 rue Didot in Paris (14th arrondissement). It is not open to the public, only to those involved in events and meetings held there.
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